question for those who work/worked

[littleme]

Hey to all of you!  I hope today is a good day.

I have to say, that I haven't had a really bad flare since going back to work.  My first two weeks were hard, but not as bad as my July was...that was before meds.

I think the plaquenil is actually starting to help as it seems to subdue my symptoms so they are manageable.  I am thankful for that b/c I know not everyone is so lucky.

The biggest issue I am finding now that I have been back a month is that by  Thursday I am feeling wiped out. It then can take me to Monday to feel better and more refreshed. 

This is how the cycle goes.  Is this pretty common?  I am asking b/c I am trying to figure out ways I can help myself through the days that are harder. 

The other question...I have noticed my mind wanders so much more now.  I can be working on something and have a thought about something else I need to do and start that.  Then I realize that I haven't finished the other and it is a back and forth or circle that I am making getting my work done.

  It is driving me nuts b/c I have found a few times that I have forgotten to finish a task or I feel very overwhelmed as I run around in circles getting it all done. 

I often feel panicked at work with the looming list of things to do and have to tell myself to breath, so glad that I did meditate in the past. 

I am one of those that with any type of worry or stress I immediately feel symptoms coming on, weakness.  Any thoughts?

Last....I have to do a lot of things where I hold my arms up for a little while (writing on a board, holding up a book) and I find even brushing my hair, my arm muscles feel like I just lifted weights for 2 hours.  They are tired right away. 

Any exercises you recommend?   

Sorry so long...I tried to break it up.  These have been on my mind for a while...just haven't had time to sit down to write.

[Babs659]

Oh, goodness! I could have written your post!

The longer I was on Plaquenil, the better I felt.  It took over a year, but I now feel almost back to my old self.  Keep taking the drug.  I used to die by Friday and took all weekend to recover.  My arms couldn't hold up the hair dryer----etc, etc, etc.

Now those symptoms are pretty much GONE.

I know it may very well not last, but I am enjoying this "remission."
Good luck to you

[Patze]

Hi Littleme,

I still work full-time, and by Friday, I'm still wiped out.  I usually spend most of Saturday trying to recuperate because I know that come Sunday, I get into gear to clean up, and get ready for another week.

Unlike Babs, I still have symptoms, but the meds sure have helped a lot, and for that I'm most grateful, but it was a long haul to get where I am today. 

Hang in there, and hopefully you'll start to feel better soon!

Take care of yourself -

Patze

[Scottietottie]

Hi Littleme 

I'm in the fortunate position finacially of being able to work part time rather than full time. I deliberately applied for a job that was for 22 and a half hours a week. I was managing that OK but still felt pretty wiped out by the weekend.

Mid summer - without consultation - they changed the job from 22 and a half to 27.  Five hours a day and two hours extra one day a week. To be honest - I'm struggling with it. Fridays are a nightmare. We work with very challenging young people and twenty hours a week with them was enough! There is precious little time for preparation of any kind so it tends to be done in unpaid time. 

I'd already pulled right back on any kind of social life but i did used to go to a trivia quiz once a week with friends. I'm too tired to do that during term times now and only see them during school holidays.  I'm not a teacher - I'm a youth worker and we get kids the school really don't want any more. They get sent to us for 'alternative education'. We used to deal with about six at a time but the numbers have been doubled and the staff reduced. I really don't know how much longer I can do it for but at the age I am, I would find it difficult to pick up another job now.

Take care - Scottie 

[Katybarstool]

Hi Littleme

I'm still working full time - although I have had 60 days off in the past year, due to various surgeries. However, when I went back after the last sickness spell, I made a determined effort to lighten my load in other ways. So, now most weeks I do my grocery shopping on-line. I've also started to pay someone to come into my house for 3 hours each Friday, to do the heavy work. Together with the Plaquenil, which I started in July, I think these things are making life more bearable.

When I arrived home form work yesterday to a clean house, and groceries in the cupboard, I felt so tired, but wonderfully relieved that I could just spend most of the weekend with my family, going to church and cooking Sunday lunch - heaven! Wish I earned enough to get someone to do the ironing though 

By the way, I decided to try this, rather than cut down hours at work just now, as reduced hours means reduced pension, and my pension will not be very big to start with. However, I doubt I will be full time for many more years.

Kathyx

[eyeamdry]

Kathy, isn't it a great feeling to come home after the cleaner has been there and cleaned the house?  When I was working, I had someone come in every 2 weeks and do a quick clean through the house.  That night going home was my favorite day of the week.  I've been off work for 5 years and I still miss this little perk.  Lucy

[Katybarstool]

Lucy

I can't believe how much difference this has made to our lives. It's hard acknowledging that you can no longer do 'everything' yourself, but once you get over that, it's good to be able to lose some repsonsibilities.

Kathyx

[littleme]

Thanks everyone.  I wish a cleaning lady was in the budget.   We can't afford anything extra right now, but when we can...I am going to ask for it.  I cleaned all day yesterday, ran the kids around to b-day parties and taught a class this AM...I am feeling icky right now. Going to go to bed for a little while before the other b-day party. (family one this time)

I will rest when I can. 

[Katybarstool]

Littleme

I feel for you with small children. Ours are grown up with children of their own now, so the budget is slightly more generous. Enjoy your rest.

Kathyx

[eyeamdry]

To those with younger children who are working, it's hard to find enough money for a little household help.  After the kids are grown and expenses are less, that's when it's usually possible to find enough to call in the cleaners!  Since I've been retired (on disability) but now it's social security, I can't afford to have that done.  I sure miss it and by the looks of my house, you can tell I have no cleaning lady come in now.  My husband is very good at pitching in though, the dear.  Lucy

[mom16]

Littleme-
I can tell you are a teacher!  I feel the same way once Wednesday or Thursday come around....wiped out!  Especially since I teach 1st grade. The plaquinil really has helped me as well but it has taken nearly a year. It has especially helped with fatigue and joint pain.
Good luck to you,

Karen

[dawnbr123]

I'm new to this Forum...so you'll have to forgive me if I flub up.
I've had Sjogren's now for two years. I work full time in a paper mill working 12 hour shifts which requires me to work night shifts and then switch to day shifts with a few days off in between. After a 12 hour night shift I'm so tired ....my eyes want to fall out because they are so dry and I'm so tired that I can hardly make it home to bed. Then when I do crawl into bed I can only sleep 4 hours at the most. I find myself falling asleep everywhere.
I do stay physically active riding my road bike an average of 100 miles a week. I've dropped 30 pounds in the process which I'm extremely happy about....
My biggest problem with SS is my paratoid glands...They swell up a lot. Every day I have some issues with them...some days it's not too bad but other days I
can hardly stand it. I never know when they will act up...It's very painful..
I take plaqinil and neproxin twice a day.
Thanks for listening....

[ynevar]

I am awaiting my diagnosis and yet to start treatment.  I have lost my job because of my medical condition.  It has been extremely difficult on me...  I have always been a work a huge amount of hours, manage a household and tend to 3 kids... and cook gourmet meals.  Now I am happy if I make a meal. 

I think a big part of the problem is that I have caught just about every cold/flu in the past 12 months.  Working in a building right next to the child program I don't think has helped.  I have always worked in social services and if I ever return to work I want my own little office away from anyone else LOL.

I just wish I could start plaquenil or something at this point.

-Y

[littleme]

Y-

I wish you could start something for your issues too.  I am not officially diagnosed with SS, but my doctor said all symptoms point that way, so he went ahead and began treatment.  So glad b/c I am beginning to realize how awful I was feeling.  I still have my not so good days, but my symptoms have subdued greatly.

Mom16....right there with you, but 2nd graders.  Thanks everyone and good luck to you all as you work/don't work or whatever you do.   

[Linda196]

Hello Dawnbr123, and welcome to Sjogrens World. No one "flubs" (love that word) here, your post is great! No one expects everyone to do things in exactly the same way, and is if they've done it all their lives, each of us brings ourself to our posts, and that's just fine! The only thing I might suggest is that you start a topic in the social board, just the same sort of thing you've posted here, as an introduction that might get better noticed so you get the welcome you deserve!

I'm glad to see you are able to keep physically active, but active or not, those night shifts can be dreadful...sleep deprivation is so horrible.